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Thursday, September 17, 2015

What I have In Common With A Toilet - Health Update

I have been doing a lot of thinking lately, thinking about my illness and the reactions I receive for not being able to eat. I decided in this post, which was going to be just a health update, will now also act as an explanation of exactly WHY I can not eat. It seems to me there are still many individuals who don't really understand this concept, and worst of all even pressure me to eat. Let me start at the beginning: my digestive system doesn't function like yours. It is out of order; like a toilet that doesn't flush. Would you use a toilet that doesn't flush? The answer is no, and the reason is because it would get backed up and overflow. This is what my system does. Sure I COULD put food into my body, but it will inevitably back-up and overflow (vomit!) Scleroderma causes fibrosis (scaring) of the soft muscle tissue. The entire digestive track from your esophagus to sphincter is soft muscle tissue. That's one big wiggly worm that is now made of stone. My esophagus is completely paralyzed, it has absolutely no movement. The rest of my system, stomach, small bowel, etc is severely delayed which causes an inability to digest. While I physically cannot swallow solid food because it would get lodged, I could definitely swallow thin consistencies. So why don't I? Why not have some ice cream every now and then? ...It will not digest! My small bowel doesn't work almost at all, this is where 90% of your digestion takes place. With this non functioning organ you cannot make stool properly. You literally will poop undigested food whole. This is a very unpleasant phenomenon that I will not divulge into to much detail for your benefit. Then there is the non working stomach, food wont even pass. It sits in your tummy for hours to days just rotting there, giving the feeling of constant food poisoning until your body finally ejects it through your mouth. ...So do you still think that ice cream is worth it? No.
I have had so many individuals try to coax me into eating, "Come on, one bite wont hurt!" or "It's thin you can swallow it!" What they aren't grasping is one bite in fact will hurt, and while yes something may be thin enough for me to swallow I cannot digest it, causing extreme discomfit for days at a time. Perhaps my least favorite is when people see me with food that I am bringing home to my husband, then implying something along the lines of, "Good on ya! Show that disease whose boss!" Like the act of simply trying to eat will make my digestion better. That is like telling a Diabetic, "You don't need that insulin, it's giving into your disease! Good for you for not taking it!" Just like me, Diabetics have an organ that DOESN'T function, not taking their insulin will only hurt them, similarly, eating food will only hurt me.

Now that that is all cleared up, lets move onto my weekly health update. Monday night I had a Sleep Study preformed at a hospital down town Seattle. This is a test that involved being hooked up to a ridiculous amount of electrodes, machines, and other devices to monitor your sleeping habits, oxygenation, carbon dioxide, and brain activity. The reason behind this study was mostly to look for the possibility of Sleep Apnea, but also to monitor my carbon dioxide levels since my diaphragm doesn't function adequately. Basically, they want to make sure I am not poisoning myself while I sleep. I also have very poor sleep habits, restless legs, teeth grinding, waking every ten minutes, extreme restlessness, and morning fatigue. We are hoping this study will give my Pulmonologist and Sleep Specialist a better idea on exactly what is going wrong in my body at night so we can improve these poor habits. A good nights sleep is extremely beneficial for someone in my position, and I almost never get that satisfaction, Upon entering the study room I was pleasantly surprised! It looked much like a upscale hotel, it even had a fancy tiled bathroom! The bed was large, the room was peaceful, and my sleep tech was very easy to work with. After all my equipment was attached, which equaled about 45 minutes of electrode placement, it was time for the study. Literally all I had to do was lay there and fall asleep. The tests results in so much data that is take weeks to accumulate so I wont actually find out the results till the end of October. Unfortunately it turns out I was allergic to the tape and adhesive they used to secure the electrodes so I had quite the crazy facial rash for a few days after the study! Here is a silly picture of all my equipment!

Lookin Fab at the Sleep Lab! lol ;)

Wednesday I was off to an appointment with my Primary Care physician. This particular doctor knew me way before I became seriously ill. She has been my family doctor for close to ten years! I never really saw her for more than sports physicals and yearly check-ups though. Now I see her pretty often since the ER's always make a follow up appointment with your PCP after a visit! lol She is wonderful though and stays very up to date with all my other specialists. She even gave me an Advanced Care Manager to assist me with my health care! She is also wonderful and has been so helpful in setting up infusions, order home healthcare, and just checking in from month to month. At this appointment we mostly talked about my recent ER visit for the suspected Stroke. She definitely believes I had a TIA (Mini Stroke) as opposed to the Hemiplegic Migraine, though she said only time will tell for sure. She prescribed a small dose blood thinner to be started, one I have actually been on before but stopped taking about a year ago... Guess I shouldn't have stopped! haha She also prescribed weekly Saline Infusions since I am having such a heard time staying hydrated. Hopefully those will start as early as next week! We just have to wait for the approval from insurance which as you know can be very slow! (I am still waiting for the Cytoxan approval that was prescribed last month!) Last but not least we ran a bunch of blood panels. I was kind of sad because my favorite phlebotomist wasn't there today... I always love chatting with her!

I finally received the notes from my visit with my Consulting Rheumatologist from UCLA. He always has the best transcribed notes that in detail account our visit, as well as his interpretation of my latest tests and procedures. Much of the notes were similar to the information shared with me in office, though there was one test that he views after our meeting: my latest HRCT (High Resolution Cat Scan.) As you know the HRCT is extremely important for a Scleroderma Patient as it gives a clear picture of what is happening inside the lungs. My Pulmonologist who had the test preformed said he thought the test was clear, but according to my UCLA Physician the test was anything but. This is why I am SO glad to have him on my team! He knows exactly what to look for and how to aggressively combat these issues due to his extensive research into this disease. According to the notes there was early "ground glass, fibrosis or honeycombing in the lower lobes of both lungs." Those terms are simply names for radiology findings of specific types of scar tissue in the lungs. What this means is that the scar tissue (fibrosis) that has found its way into my skin, blood vessels, and most recently my digestive track, is now starting to manifest itself inside my lungs. This is called Interstitial Lung Disease, a type of Pulmonary Fibrosis caused by Scleroderma. This was of no surprise to me, or my physicians. With Systemic Scleroderma on a path such as mine it was only a matter of time. There has actually been a few studies done showing that esophageal involvement directly correlates with lung involvement. (Study found here!) The more severe the esophageal involvement, the more severe your lungs will be involved over time. As I have complete aperistalsis (paralysis) of the esophagus I can only imagine how bad my lungs will get if we do not attack this fibrosis immediately.
If left untreated progression and death are imminent, however; with proper treatments such as Cytoxan, fibrosis in few cases can be halted. While you cannot fix previous scaring, halting progression is a great goal! This new scaring of my lungs is the reason why my recent Pulmonary Function tests have been so poor. Within just a few months this beast of a disease has dropped my DLCO by 20%, that is how fast things can progress with Systemic Scleroderma. Hopefully I will be one of the lucky patients that finds great results from Cytoxan!

22 comments:

i too had a sleep study recently to try to help me get a better sleep as having chronic illnesses myself it is important. i also had a reaction to the adhesive on my head face and neck it stunk especially because we already knew i was allergic but thought i would be ok with a certain kind of tape. we were sooo wrong. itched and burned for day :( it was bad enough they say i cant have a sleep study again because it could be worse and next time could effect my airway :/

I have a very legitimate question and I know this is cutting into your personal life, but can you and your husband come together as husband and wife? ( sorry that was the most modest way I could possibly put it) I have been wondering since I read your blog and am about to get married myself. Also another question do you have a menstrual cycle? Once again sorry for the personal questions I am just truly very curious.

Ashley duhon every scleroderma patient is different but has similarities. That goes for intimacy as well. Some scleroderma patients don't have intimate issues, some experience pain due to extreme dryness, pain due to fibrosis which tightens the vaginal walls making it uncomfortable to enjoy their partner or significant other and their are thise women who are physically fragile and experience guilt for not being able to engage sexually with their partner. I have Systemic Scleroderma with Interstitial Lung Disease therefore, I am on oxygen as needed mostly with exertion. Sex is a very physical act so, when I would engage with my partner wearing my oxygen benefited me more than deep breathing exercises however, I personally chose not to be intimate on a regular basis due to extreme fatigue and irritability which is due to a lack of sleeping. I like to compare my lack of sleep and intimacy with driving a car while the gas gauge is on Empty. I hope I answered your question about intimacy and chronic illness. Take care Ashley duhon.

Hi Ashley, I hope you understand that since this blog is public I will not divulge into great detail regarding the answer to your question. ;) It is totally legitimate though and I completely understand your reasoning for asking! 1. While it is possible it is extremely difficult due to my ailments. 2. Yes I still menstruate but very, very irregularly. Thank you for reading! Congrats on your upcoming wedding!

Very good question! I realized after I wrote this that there could be some confusion. There are special brands of Feeding Tube Formula made for those with severe digestive dysfunction called "elemental formulas." These provide nutrients in a pre-digested, easily absorbed form. My body has to do almost no work to receive the life sustaining nutrients it requires. It is low residue, low fat, and contains 100% free amino acids which require minimal digestive functions. Thank you for reading!-Chanel

I just love you girlfriend. (not in a creepy way) Lol lol. You continue to blow my mind :) Does the fear just grip you sometimes? I know you do everything on God's green earth to look at the bright side, but sometimes there isn't really a bright side. Ever feel jealous? How could you not. You've been robbed, and quite frankly it makes me so angry. The kind and thoughtful and beautiful girl that you are should not be subjected to so much suffering. It's just not right. My heart goes out to you right now Chanel :) xoxo

You are so sweet Kristen! And the answer is YES, absolutely! Often times with this disease there is no bright side and you are left to wallow in darkness. At first it was hard carrying this burden, but as the years have progressed and i have learned to accept my circumstances the darkness doesn't bother me much. I bring a flashlight! haha But sometimes I like to just sit in the darkness and feel it.. you know? Wallow for a while. Everyone deserves a good cry now and then!

Shoo, you're tough. That darkness is too intense for me. For me it's like, my fear is that I'll out live my Husband and the 3 loves of my life, My 3 chihuahuas. Obviously not a single one of us knows what tomorrow holds... It's like a strange comfort to think I'll go first. It's the being alive part ,while everybody has died, that terrifies me. Idk, that probably sounds weird, but for me it's true.

Shoo, you're tough. That darkness is too intense for me. For me it's like, my fear is that I'll out live my Husband and the 3 loves of my life, My 3 chihuahuas. Obviously not a single one of us knows what tomorrow holds... It's like a strange comfort to think I'll go first. It's the being alive part ,while everybody has died, that terrifies me. Idk, that probably sounds weird, but for me it's true.

Idk if I'm allowed to say this on your blog, but.... As we all know, there are TONS of people who are way more like a toilet than you. Lol. You know why of course, They're Full of Shit !!! Lol ha ha ha

Just found your blog and I'm glad I'm not the only Sclero Blogger out there. We are both strong and inspirational women to others, so please keep blogging! I am able to keep teaching (part time) and I work from home for an online school but I am also a "professional patient" it takes up so much of my time and I've learned how to keep track of appointments, records, bills, prespcriptions etc. Most people look at me in awe when they realize all that I have to do just to function and STILL work a "real" job. Keep your head up and good luck with the Cytoxan..I will be starting Rituxan soon (if the stupid insurance would hurry up and approve the 2 appeals I've already sent), my kidneys aren't doing well so we're hoping to get it under control, I refused the Cytoxan for now cause I'd like to try and have kids one day still. But if my body doesn't respond to the Rituxan then I won't really have a choice. Here's hoping things get better for the both of us! Check out my blog at www.chronicbrevity.blogspot.com Hugs! And good luck!

Hello Jasmine, nice to meet you! It's always great to connect with other sclero bloggers. It's wonderful that you are still able to teach! I miss it so dearly; I was not ready to give up my career, but sadly my body was. I hope you can continue for many years! I was on Rituxan for the past two years at very high doses. It worked for the first year or so, but unfortunately stopped working for me in the second year. Cytoxan was a very hard decision as my husband and I desperately want children, but at this point in my journey Cytoxan is our only choice. Hopefully this drug will be the one we have been waiting for! Good luck with the prior auths! I know how frustrating that is... it took me months to get the Ritux approval as well! ;) Hugs!